Friday, September 30, 2011


I was in a building often utilized by people with intellectual disabilities. I had just finished a meeting and had parked my wheelchair just outside the washroom to 'shed a tear for the widows and orphans' as my father used to say. The accessible washroom was a bit awkwardly located and, thus, my wheelchair took up a fair bit of space. I had just got back into the chair, and was just turned to head towards the exit, when someone came in and, stepping by me, said, "I hope you didn't make a mess in there!"

The tone of voice was one I recognized instantly, it was the one used exclusively for people with intellectual disabilities and naughty puppies. I looked up in shock at being addressed in such a patronizing and dehumanizing manner. The person saw me, brightened with a smile and said, "Oh, my gosh, you're Dave Hingsburger! I didn't recognize you at first!" Then she chatted brightly about how much she enjoyed my lectures, how nice it was to finally meet me, how she had used my written materials over the years." I just kept staring at her, still a bit bruised by that tone of voice.

I think she realized, from the look on my face, that I wasn't really taken by the "fan" chatter and said, "Oh, gosh, sorry about before, I just thought that you were ..." she let the sentence trail off. But the world left unspoken, hung in the air, "the R word".  Then, as if her behaviour was fully explained, she smiled again, said how nice it was to have met me and then she was off. I said "farewell" coldly and left.

There was no great confrontation.

I have supported, loudly and often, the effort to end the use of the "R word" in speech. I hate that word. I hate how it's used. I hate what it represents. I hate that the people who don't get it, don't get it.

Now, I want to broaden the campaign to end the use of the "R word" in behaviour as well. Being called a name, hurts. Being treated as if you deserve to be called a name, is even worse.

I found it very difficult to shake off the hurt and the humiliation in being spoken to in that tone of voice, by a stranger, about an intimate behaviour. Being talked to publicly about the supposed mess I would have made in a bathroom by someone who had no idea about my proficiency in a bathroom in a public hallway within hearing of many others was a kind of brutalization that really stung. Having my Social Quotient tied to and determined by an assumed Intellectual Quotient made no sense to me at all. The connection, in fact, infuriates me. I should be valued simply because I have value - not for any other reason.

There shouldn't be a test which determines the rate of social respect that I get:

Perfectly Polite

Mildly Indifferent

Moderately Rude

Profoundly Insulting

I think that the shock of going from 'lambasted with attitude' to 'lauded with praise' is still with me. I know the woman who spoke to me thusly reads this blog and I know that this will upset her. I didn't write this blog last night when I wanted to, I waited to sleep on it. But I found it difficult to sleep. It was as if I was a 'princess' (shut up) and this incident was the 'pea'. It niggled at me and niggled at me throughout the night. So, finally, I've gotten up to say what I want to say.

To the woman, who I know is upset by reading this:

Your tone hurt me.

The idea that that tone comes easily, to all of us who have power over others, hurts me more.

The confession that I've used that tone, too often to too many, pains me most.

To all of the rest of us:

End the "R word" in speech, in behaviour and in determining value.

Thursday, September 29, 2011

Sobriety 101


There are just so many things to lose.

There are just so many ways to lose them.

My past, is peopled, with memories of those who are gone, those who left, those I pushed away. This means, of course, the my past is also peopled with regret, populated by sorrow, and inhabited by grief. Sunshine makes the shadows, I have grown to realize, so when I see one, I need to be aware of the other. Even so, there are so many ways to lose people.

The hardest to bear, for me, are the people who are stolen from me, kicking and screaming, still alive. I deserve the pain of those I hurt and who ran, or those who hurt me and I reacted with an unforgiving heart. But today, a small miracle. Someone living, came back from the dead.

We were having lunch, in the fall sunshine, on a patio not far from home. I was on the phone talking about a fairly serious issue at work. A fellow loped over to us, a smile spreading across his face. He was casually, but well, dressed, I thought, 'what is life throwing at us now?' Joe stood, immediately upon seeing him and smiled just as broadly, I looked again. It had been years, but here stood a friend, a long ago friend, a friend who had been stolen from us.

They stepped aside to talk as I concentrated, with great effort, on the phone call. I had to think and make decisions, hard to do with my heart beating rapidly. But off the phone, I motioned them back. He sat down, waved away the waitress offering food and drink, and said, '101 days, boys, 101 days clean.' Then we chatted. We caught up on what he was doing and how he was doing it. He was confident that this time he had the motivation and the attitude right. He'd gone off it all, drugs, alcohol, tobacco ... all of it. He's been through several life stressors, as if life was testing his resolve, and managed to handle it without blunting reality. As he spoke I remembered back to the days before, before the grip of addiction had him, I remembered the bright and lively person he was.

He was back.

He's been back.

For 101 days. he's taken a stick and beaten his demons into retreat.

For 101 days, he's taken hold of his courage and held firm.

For 101 days, he's take the 're' out of 'lapse'.

101 days, he's lived in the world again. And on the hundred and first day he chose to walk down the street where we were having lunch. He greeted us with such warmth. He didn't want to talk about the old days, he wanted to talk about the new ones.

The ones that followed the hundred and first.

No, he's not Lazarus, but the miracle is just as great.

To me it is.

Wednesday, September 28, 2011

Give Yourself a Quarter If You Can Follow This

An odd thing happened at the Duty Free.

We were both tired, but we stopped to pick up cheap beer and to 'spend a penny' as my Grandmother used to say. I rolled down the steep ramp and used the momentum to carry myself straight to the car. I locked wheels, swung off the footrests, got up and hoisted myself into the car. Joe went round to take out some of the food cartons that were cluttering up the back seat and after having deposited them, hopped in the car. Just as he was turning on the car and turning around to see if anyone was coming, he noticed that we'd left the wheelchair sitting alongside the car. If he hadn't looked, we'd have driven off without it. The mere thought fills me with horror.

I think this moment represents a huge step in my development as a person with a disability. Really. I do. It's hard to explain but I'll try by telling you another story:

When I first came to Toronto I worked as a classroom assistant with students who had physical disabilities. They were fully integrated into the regular classes in the school but had a segregated home room. The home room provided both a respite from the task of integrating the classrooms of others (difficult work, seldom honoured) and all sorts of adaptive equipment and a huge accessible washroom. There were two classroom assistants, one male, one female and one home room teacher. I wasn't much older that many of the kids in the classroom, having only just graduated from University, and I got along quite well with most of them.

One day, I was walking head of a woman who was powering her wheelchair along behind me, we were deep in conversation. She was the woman who introduced me to the idea of disability pride and the concept of 'embraced identity' for people with disabilities. She was far ahead of her time. So, we were talking. I walked through the door and let it close right in her face. I took a couple of steps and realized, 'Oh, Gosh, I'm supposed to be here to hold doors and make access possible.' I opened the door to find her laughing. She said, 'You forgot there for a minute didn't you?' I admitted that I had. She said, that I shouldn't worry that she simply forgets sometimes too.

When disability becomes fully part of you, it's hard to see it represented as something a concrete as a wheelchair or a held open door. I was in the car, therefore, that's all that was needed. Somehow it was easy to forget something that both is me and isn't me at the same time - something like my wheelchair.


I just read this over and I'm not sure I'm making any sense at all. But I'm convinced that this happens to all with disabilities. I think I've seen people with Down Syndrome lose their extra chromosome down the sofa cushions. I think I've seen people with cerebral palsy have moments when their cerebral forgets their palsy. Then we all have, 'oh, yeah' moments. And rush to get what we've left behind. Because it's part of us. Because we value what it is and what it means. Because it is who we are even though it isn't what we are.


I'm confusing myself.

I've decided not to wipe out the post and start again, because I think I'll end up with pretty much the same mess as I have here now.

Thing is - we almost drove off, leaving my wheelchair behind - and somehow I think that's significant.

Tuesday, September 27, 2011

Hope in Three Acts

There's Cause for Hope (1):

"Excuse me, sir, I'm just going to slip past you," said the voice of a young man behind me. I realize as I write this how disturbing it is when I'm referring to someone in his thirties as a 'young man'. Anyways, when I heard his voice I looked up and saw him advancing towards me. I took hold of my wheels and began to move out of his way. There wasn't much room to move as I was in the 'accessible' aisle of the Wegmans where Joe and I were shopping in Buffalo yesterday.

As soon as I began to move, he said, "You don't need to move, I have plenty of room to slip by you."

I looked again and realized, in kind of a disturbing way, that 'plenty of room' was defined very differently in his world than it is in mine, but looked up at him questioningly. I wasn't really sure why he'd  spoken to me at all then.

He saw the question in my eyes and said, "I didn't want to startle you or accidently brush against you, I'm just letting you know that I'm here and I'm passing by."



How odd.

There's Cause for Hope (2):

Before driving down to Buffalo, on my way to give a lecture down state in New York, I was at the 'Rally for Vita' and rolling around in my wheelchair. The whole thing began at Kahuna Powersports and when we arrived there were motorcycles everywhere. I was in a sea of leather and denim and the unmistakeable smell of oil and engines was in the air. I watched as this teaming mass of 'riders' who wore skulls and slogans like 'Born to Be Bad' gathered to listen to the opening cerimonies.

Antonella, one of Vita's members, a woman with Down Syndrome, spoke for Vita and welcomed the riders to the event. I watched them as they watched her. I'm mistrustful and very, and probably inappropriately, protective of others with disabilities. I am so used to seeing judgement flash in the eyes of others, I'm so used to seeing superiority worn with casual brutality, that I tense up in situations like this one.

But this time, though there was judgement, it was one of admiration. They all saw the courage, the determination and the talent that Antonella had in her role as 'host' and 'spokesperson'. I think many thought about how much they'd hate having to get up in front of strangers, and intimidating strangers at that, and speak. I really got it myself when, later, I had to speak at the end of the rally. Looking out at the worn leather jackets, the torn jeans, the goatees and the biker chicks, I thought 'man, this is so not the audience I'm used to speaking to'. I remembered Antonella's grace, and used it to model my own approach.

Again, I found warmth where I expected something else. It was like, though they rode on two wheels and I on four, we were all just 'riders'.

There's Cause for Hope (3):

We'd had a busy day, and I just forgot.

When we are travelling, I always call the hotel an hour or two before arrival. I've had enough problems with miscommunications (accessibility means only two stairs) that I mistrust right up until I'm in the room and checked the bathroom. So, I call, I double check, I go over a definition of terms, I make sure that there won't be an issue. But, I forgot. We'd had so much to talk about that I was more involved in living life in the actual present than I was in worrying about the immediate future.

So when we pulled up to the hotel, I panicked.

Really panicked.

The room was fine.

Monday, September 26, 2011

What I Learned From Susan

Though people often refuse to believe me, and I've never understood why, I am a very nervous and uncomfortable public speaker. I know I do it a lot, sometimes every day of the week, but I've never gotten over the nerves and the discomfort that comes from putting myself, purposely, on display. Whenever I tell someone they almost always say, 'That's really hard to believe,' with a tone that tells me they don't believe me at all. Well, in fact, it's quite true. I get wildly nervous almost every single time I get up to speak. I have to take a sleeping pill the night before a lecture and an anti-anxiety just  before giving the lecture. It's now part of the routine, I accept it. I've been very cautious about my use of these medications and now trust myself, I only use them at those two times, never at any other.

What makes me really, really, nervous is lecturing in front of people I know. When I have to speak at the staff retreat at Vita, I'm wild with nerves. I mean, I'll have to see these people again, and again, and again. So the cost of failure is so much higher than flubbing in front of strangers who you get to leave behind - who only visit you in haunted memories of a bad performance. So, the cost is so much higher when there is so much more to lose.

Well, I learned something on Friday at a lecture I gave here in Toronto. I didn't know my friend Susan was going to be there so hadn't prepared myself that someone from my personal life (and professional life too, I suppose) would be in the audience. I saw her, she saw me, I waved, she waved back, she came and gave me a hug, I hugged her back. It was nice. As she went back to take her seat, I noticed something. When I looked down into myself, I didn't find the extra parcel of fear that comes from lecturing in front of a friend. It wasn't there. I searched for it, I looked under my stack of unexpressed regrets, I moved aside my pile of unresolved issues to see if it were hidden there, I even opened the dreaded drawer of disappointments and dropped opportunities, just to see if I'd misfiled the fear there.

I hadn't.

So there sat Susan, looking up at where I was sitting. The very same Susan I have tea with. The very same Susan who'd brought me a bag of home made granola bars because I'd gleefully guilted her into making them for me. The very same Susan who shares friends and interests and life stories with me. Yep, she was there, but the fear wasn't.

Why not?

I realized, with a shock, that it would be OK to fail in front of her. I knew, just knew, that if I did, she'd still be there, she'd still have tea with me, she'd still make me granola bars, she'd still call me friend. I knew, just knew that our relationship had moved in to the rare category of 'I'm safe with her.' It felt amazingly good.

And suddenly I realized how difficult it must people for people with intellectual disabilities, who's primary disability is one of learning, to live in a world where they must try, and fail, in front of others. Who must live with the judgement and disappointment of those who are supposed to care. Who must be at the end of other people's patience and understanding,. Who must feel the enormous, crushing tire tracks left on their souls when the eyes of another roll. For I wonder how many people, cause I know I didn't, ever really work at teaching people with disabilities the first and most important lesson: you are safe here with me, you are safe to try, you are safe to fail, you are safe to try again. Who bothers to teach children with disabilities that though they may have to struggle with learning they will never have to struggle to earn, or deserve, or be worthy of love and respect and caring? Who bothers?

Somehow Susan bothered.

Somehow she taught me that her care for me wasn't contingent, wasn't based on my performance, wasn't based on something as trivial as momentary success or momentary failure. I don't know how she did it. But she did.

And because she did, her presence there on Friday comforted me. Instead of feeling fear, I felt that I had someone standing resolutely in my corner. Someone I could trust.

Now I have a goal.

I want to ensure that I spend at least a little bit of time, every day with those I supervise, with those I support, with those I teach, letting them know something about me. Something about my character. I want them all to know that I honour success and I honour failure - that I'm honoured that people around me risk to learn, risk to try and risk to grow. That I want to be a person that stands with them, in their corner. That they need not, when I'm in the room, tuck a parcel, labeled 'fear' in a dusty corner of their heart.

Sunday, September 25, 2011

A Brief Update

Some of you may have noticed that I've not posted for a few days. I don't think I've gone this long without a post in well over a year. I arrived home on Thursday to find that my computer no longer had Internet access. After talking with the COMPANY on the phone and turning off the modem then turning on again, several times over nearly two hours, they decided that something was wrong. I remain convinced that the 'unplug it, now plug it back in' strategy is just a ruse to make you feel like you are getting assistance. Anyways, an appointment was set for Friday evening, they didn't come. Then an appointment was set for Saturday morning - first thing. They didn't come.

After many calls over several days, frustrated yelling on my part, patronizing responses on theirs, the technician guy showed up. Didn't yell at him, I have never understood yelling at a clerk because you are mad at a store policy, so I never punish someone just doing their job for the behaviour of those that didn't. He was nice, fixed the problem and was off. I was left feeling wrung out and drained. It was like I had to battle a battalion of people who didn't care that they didn't do what they promised to do and who felt like the solution to the last broken promise was to make a new one. I'd felt like I'd spent several days in the House of Commons. It was horrible.

So the computer's back and I've been spending my time getting all the work stuff done, just finished the last email now, just finished the last apology for late response, and now it's time just to update you. So here it is, I'm alive and well, I've got a computer that now works, and I'm exhausted from the experience of being a loyal customer.

Be back tomorrow with a regular post.

Shannon's Blog would be a good place for those looking for a thoughtful post. She's a wonderful writer who has much, much, to say, I loved this piece on 'intentionality'.

Thursday, September 22, 2011

I Needed To Write This for Me: You are welcome along.

As I've gotten older, I've come to believe that it's important to embrace and accept my own personal history. It is my job to incorporate into my life and my mind all that was, I believe that it prepares me for all that will be. I've had a hard time coming to this point of view. I've kept giving my life false ends and new starts. I've kept revising my history not be denying that anything happened or that I did anything I did, I just kept moving the marker forward.

The day I moved from Salmo.

The day I met Joe.

The day I graduated from University.

The day I moved out east.

All these real events took on a new and different marker: starting new.

I wasn't new the day after any of these, I was, of course, the same old me struggling to become a better new me. I figured the way to be better is to banish the past. I tried to make any new beginning smell like new books on the day after Labour Day. I tried to make my new beginnings feel like new shoes made for walking a new path.

It never worked, of course, the old me just kept barging through the newness. My old fingers scribbled on the new pages, my old fork dropped cherry pie on my new shoes. As much as I tried and failed at new starts, new denials, new detachments, they never workd.

Then, yesterday, Joe (who has provided more 'new start' opportuntities than any other single event or person in my life - he really is the kind of guy you want to be better for) handed me a picture that had fallen out of one of the files in my briefcase. I looked at it and was really, really, startled. It was a picture of me about the give a lecture, The picture was taken from far, far, away so you can see it's a really big hall. I don't remember where this was, but the hall is beautiful. Really, really, beautiful. I am on stage:


It's been five years since the wheelchair so it must be more than 5 years ago. It startled me, deeply. There are few pictures of me around in my stuff, others have more pictures of me than I do, and so this one came out of the blue. My self image had evolved to being one of a lecturer who travels extensively, SITTING DOWN, and here I was standing. I can tell the picture is take just before I was about to speak. I could tell that the Dave in the picture could not imagine being wheelchair Dave finding the picture. Well, wheelchair Dave had just as much difficulty relating to him.

I've looked at that picture a few times now, knowing that that moment in time is just as full of 'Dave Now' as was any moment of my childhood, adolescence and youth. It's just all me. There was one start, one path, and, ultimately, one destination. The course I take has options and choices, but the feet that walk, the wheels that roll that path, were walked and rolled by me.

Being all of me, from the start, requires something of me that is hard, to acknowledge. Responsibility for knowing what I've been taught, wisdom that comes from having toiled through darkness and found my way, and a kind of mature joy that comes from having been there in the beginning, having been there in the middle, and being there peeking over towards the end.

For me, I hereby give up the, new starts and accept that the journey, all of it, is mine.

Wednesday, September 21, 2011

A Vote!!!!

Right now Ontario is gripped in the midst of a provincial election. Well, gripped isn't really the right word, but none the less, the election is upon us. The hotel we're staying in right now was host to a big rally of one of the big three political parties. We rode in, saw them all in the lobby, and raced to our hotel room. It had been a long day and we weren't up to electioneering.

We got to the restaurant in the morning and I sat at the end of a long table, right across from Joe. Behind me to my left were two well dressed, well to do kind of guys. A few seconds later, into the restaurant came the leader of the political party, the one running to be Premier, along with the mayor of this said burgh. They chatted and introductions were done and everyone laughed just a little too loud. I looked over and caught the eye of the politician in the running to be the head of government. He nodded, I nodded. Done.

Then on their way out, all three of them stumbled into the wheels of my wheelchair, they were the only ones to have done so, I wasn't in the way, none apologized. The leader steadfastly looked away from me, I felt to avoid having to glad hand me. I wasn't in a suit and I was in a wheelchair - I just seemed to be so incredibly far below his radar. Yep, I felt unduly snubbed. On television later I saw his smiling face and him being welcoming and gracious to people. Why didn't I get that guy ... reasons ...

no cameras on - no need to be friendly

wasn't a rich, business type guy - no money to be gained for the campaign

simply doesn't consort with the disabled.



Who knows. But I'm left with a quandary. I've, on this blog, named some politicians who have done things that I thought needed lauded, I've named celebrities and judges who I thought needed to be named and shamed. But I've never used my blog ultimately in a political way, though I have lambasted the use of disability negative campaigns, but this is about a person and a person's behaviour.. Should I?

Is it important for me as a disabled guy to point out behaviour of those running for office, who engage in what I consider discriminatory behaivour towards me? Is that a duty? Even if it was the party I was going to vote for ... might still? Even if it was the party I'd never vote for ... ever?

Should I name names.

I leave the call to you?

Please vote in the comment column.

Tuesday, September 20, 2011

Blogging About Friends

A friend of mine began a conversation with: "Do I have to preface everything with the question, 'Will you be writing about this?'" It was only then that I realized the absolute fear some people might have about being in any kind of conversation or relationship with me. I explained to my friend that I don't blog about friends without permission from the friend involved. Before he began he told me that he didn't mind me writing about some things but didn't want to be named or identified. He didn't want a life on my blog, didn't want to read about himself. It was a good conversation.

But then, he told me something that I really, really wanted to blog about.


Really. Really.

But I'd made a promise.

An hour or so later he said, 'You want to write about our conversation don't you.'

'Oh, I do, I do, I do,' I said, 'But I won't, I won't, I won't.'

He laughed and said, go ahead, just don't mention me and give it a day or two so people don't try to figure it out. I told him that I thought he might be being a tad paranoid because ... first, I kind of have normal readers who have real lives who don't obsess about every little detail of my life ... second, I'd not mentioned him by name before on the blog so there was no precedent for people figuring it out. He joked, 'So, now should I be offended that you'd not written about me before?' Anyways, the end result was that I could write about it.

Now you are all going to be disappointed because what I was going to write about isn't really worthy of such a big build up ... even though I thought you might be interested in knowing what the blog has done to my circle of friends.

My friend is starting a new job working at one of Canada's really big chain stores. He's just finished training and he told me, excitedly, that there was a full half day about providing service to people with disabilities - all different kinds of disabilities, intellectual disabilities, mobility disabilities, sensory disabilities ... the list was long. It was all about the stores deep and abiding commitment to providing a welcoming all who came in the door. Further there were cautions about not blocking aisles with displays and maintaining clear accessible passageways throughout the entire store.

He told me that he paid very close attention, having been my friend for a few years, he was waiting to them to err on the side of patronization. But, he gave me a list of the kind of things they were saying and they got them pretty much all right. He said that he looked forward to his job knowing that he was working in a place that make a point of making sure that all were treated with respect. More, a store that I will be able to shop in whenever I wanted.

Me, I was just glad to hear that a large corporation was spending time and money to educate their staff in how to provide respectful service to all. A store is only partially accessible because it has a flat entrance and wide aisles, it becomes fully accessible when the staff have open minds and ramped attitudes.



Monday, September 19, 2011

High Tea for Two Princesses, a Couple of Queens and Assorted Commoners

Sunday was a big day. We celebrated Ruby's fifth birthday and Sadie's coming second birthday by going to the Chateau Laurier's High Tea. The girls had the Little Princess Tea and the rest of us had the Royaltea. Ruby and Sadie got all dressed up, Ruby was a vision in a lovely fall chiffon dress with a lavender print and Sadie wore a wonderfully evocative military style grey pinafore over a cream blouse. (I'll never be able to write a fashion blog.) Us adults didn't do quite so well with our attire but we all scrubbed up OK.

I had called ahead and done the 'wheelchair user' reservation, I'd also mentioned the fact that we're all vegetarians, I further mentioned that one of the children was just slightly under two. I hung up thinking, 'Well, I've done my part, now lets see if they do their part.' I find this a slightly tedious and anxiety provoking aspect of planning. I say 'disabled' and people hear 'can walk up seven steps' ... I say 'vegetarian' and people hear 'will eat chicken and fish'. But, I did what I could to make it a success.

We pulled up the drive of a truly lovely and majestic building ...

and Joe got out the chair and we waited for the rest to come up the driveway having walked from our hotel parking lot. An older couple came out of the lobby and looked down to see them all coming up towards the hotel. The sun had caught the gems on Ruby's waistline and they shone brightly, lighting her up like paparazzi bulbs. The older woman gasped and said, 'Look at those two lovely children!' My heart swelled with pride.

Then we were in and walking towards the restaurant. Ruby was tall enough to have seen in the windows and saw other little girls dressed up having tea and was bubbling over with excitement.  Sadie was taken by the huge chandeliers and the amazing furniture. When we arrived and gave our name, they had a table waiting for us, on the lower level, and our waitress arrived and told us about the vegetarian options - without us asking. Everything went smoothly.

It's amazing what can happen when people 'listen' to what is being 'said' and 'hear' what is actually 'meant'. It's even more amazing that I find that amazing.

We had a lovely time. Free of stress. Full of laughter. Wonderful moments like seeing Sadie pick up a big cup of hot chocolate, and closing her eyes in delight as the whipped cream and the chocolate filled her senses. Like seeing Ruby carry herself with incredible poise - with exception of the moment that she dug her spoon into the jam because 'It's really, really, good.'

At one point, and this might be the high point for me, Ruby was standing beside me and I was telling her a story, her eyes danced as she listened, a captivated audience to my tale of watching her come up the driveway and what the woman had said. I noticed other people notice the love in her eyes as she listened to me talk. I noticed that her love, affected their view of me ... I became both more ordinary and more extraordinary in the same moment.


The funny thing about all this. The kids ate their food with great gusto and incredible refinement all at the same time. They left as stainless as their souls at birth - me, however, I had jam and butter and crumbs and tea all dribbled in a straight line down my shirt.

Ah well,  the nice thing about being disabled ... people expect a mess


I have some pictures but I'm no photographer, I chose not to put them on the blog because they are blurred and smudged and look like I took them. I've got an email in to Mike to see if he can send me some of his so I can put them here for you all to see if you'd like.


Despite the line of mess down my shirt, I showed great poise myself when seeing the bill ... it's amazing what a cuppa tea can cost these days.

Sunday, September 18, 2011

Elmo, Grouchland and Me

A short blog after a long day with two kids and lots of activities.

We were going to an older movie theatre, not one of the chains. As we approached, I decided to explain to Ruby that the movie theatre, the only one playing an 'Elmo' movie, the one about his visit to 'Grouchland', was one built a long time ago and I may not be able to get into it.

She said, "Why not?"

I said, "Well, they might have stairs to get in, or the doors may be too narrow, or there may be no place for me to sit in my wheelchair."

She thought for a bit and said, "So we might not be able to go to the movie because you might not be able to get in." I nodded and wondered if she would start adding up the cost of being in relationship to a guy in a chair. Then she said, "Why did they make old buildings with stairs, didn't they know that it would mean that people who use wheelchairs wouldn't be able to get in."

I said, having a momentary attack of bitterness, "They knew but they didn't care."

We got to the theatre and, yes there was a stair up into the theatre, and several stairs from the lobby to the hall. But they had made a back door accessible with a flat entrance and a ramp installed where stairs used to be. I think Ruby was really relieved that we were able to get in, not just because she wanted to see the movie, but because she didn't want to see me hurt. I explained to her how someone had taken out the stairs and put in a ramp.

"Who did that?" she asked.

"I don't know," I said, "but I do know that it's nice to be able to get in to the building."

"Yeah but," she said, "they never should have kept you out in the first place."

And that, was that, as far as she was concerned.

Elmo learns to share, while Ruby learns the basics of social commentary.

Saturday, September 17, 2011

It's A Bouncing Baby Man

He didn't see me sitting behind him. I don't know if my presence, known about, would have made a difference. I'm guessing not. We were waiting for the light to change to head north and as such were watching people cross from the east. A woman, maybe on 20 or 21, was making her way carefully across the street. She had an unsteady gait, I'm guessing she had cerebral palsy, and navigating over the streetcar tracks took all of her concentration. I'm glad, because, he nudged the friend next to him and started to imitate her walk. His friend found this hilarious and worked to keep from laughing out loud.

She crossed in front of us, not having seen the mocking, or maybe working and pretending she hadn't seen it, it's hard to tell sometimes. Anyways our light had changed to green and everyone who had waited headed north. My stomach was churning. I knew I was building up to say something to him. Most don't believe me but I really don't like confrontation. Really, really, don't like it. But I make myself sometimes. We pulled to a stop at another light and I reached forward and tapped him on the shoulder. He turned to look at me. I was terrified partly because I was going to confront him for his behaviour, but also partly because bullies are amazingly adept at finding new victims. I didn't want to be his next target.

"So, I just wanted to know, do you make fun of people with disabilities, like the woman at the crosswalk, because you are cruel or because you actually hate people with disabilities? I'm always curious when I see hateful behaviour like that.' He was, in a word, thunderstruck. I waited to simply be struck. His mouth opened and closed, several times, like he was astonished to be addressed by a stranger, a fat guy in a wheelchair no less, and confronted about mocking someone else.

He didn't shout, he didn't yell and, most importantly, he didn't hit me. "Come on man, I was just joking."

"So you figure that you can joke about her because you are better than her, is that it?"

"No, I was just joking, really, just joking. Besides, she didn't see me, so what difference does it make."

"I saw you, she's part of my community, doesn't that matter? Don't I matter, don't my feelings matter?"

Realize now, we are actually having a discussion. His friend is wanting him to go, ignoring me said friend kept saying, 'it was just a joke, let's go.'

The young fellow said, "OK, so I'm sorry, is that what you want?"

"No," I said, "I want you to realize that you have the potential to be a fine person. You didn't yell at me, or hit me, you've chosen to talk to me. Behind the facade of a guy who makes fun of disabled people, is a pretty nice guy. I just want you to have to courage to be him most of the time. Cause, frankly, the other guys an ass."

He smiled. Actually smiled. "I don't think I've ever been told off so nicely. You're right, what I did was beneath me. I won't do it again. Cause, really, I'm a nice guy."

"Dare to be that guy," I said.

I rode home thinking, 'that so didn't go like I thought it would go.'

I think, maybe, I was the midwife at the birth of a real, actual, adult man.

Friday, September 16, 2011

A New Talk: Done and Dusted

It's over.

I spoke, yesterday, at the 8th annual A.C.E. conference - which is a conference for self advocates with disabilities. I'd been asked to do an inclusive keynote for both people with disabilities and their staff. These are way more difficult than you can imagine, with such a jumble of learning styles, with a need for the message to be inclusive, with the need to leave no one behind, it's way more work, if those goals are taken seriously, than you can imagine.

Well, I decided to go 'full tilt boogie' and do something radical. I wanted to talk openly about disability and difference and bring an aspect of 'pride in difference, pride in disability, pride in diversity' message. To people with intellectual disabilities much of this is new. Many are fed on the lie: we're all the same. Well, we aren't all the same. It's difference that gets targeted by bullies, by teasers, by name callers, by passersby who stare. It's difference that changes attitudes, closes doors, limits options, feeds bigotry. I believe that the only way to confront the bias without is to confront the bias within. So, I was going to take the chance and say, I'm disabled, most of you are disabled and all of us are different. Get used to it. Get over it. Come to value it.

I had four slogans that I wanted people to yell out at different parts of the stories I told:

I am what I am.

I know what I want.

I have something to offer

and one more for good luck,

I can't be who I want to be until I'm comfortable with who I am.

So, I hit the ground running (obviously a metaphor) and waited to see how people responded to an up front, out of the closet, disabled speaker who mentions the human condition that dare not speak its name - intellectual disability. Well, the floor didn't fall out under me. The audience didn't rise and tackle me. Some faces looked at me in shock but most looked at me with a ... finally, FINALLY, we're telling the truth. It was great.

Afterwards several people with disabilities came up to tell me stories, to thank me for my talk, to say nice things. I was in a rush because I had to drive a long way to the next hotel, so I couldn't talk long. One fellow, hung back a bit, but just before I left, he came up and tapped me gently on the shoulder. He had tears in his eyes, 'It's hard for me to say that I'm ...' and he couldn't say another word. I said, 'It gets easier.' He nodded and I rolled away, I stopped and looked back and him and called out, 'And it gets better.' A tear flowed down his cheek, he didn't brush it away, he just turned and walked back into the room.

I'm glad I had the courage to say what I wanted to say.

I'm even gladder that he had the ultimate courage, to begin to recognize who he is - he's now on the journey to self hood, he's on the journey home.

It's over.

Thursday, September 15, 2011

Happy Birthday Ruby

Ruby turned five on Tuesday. Five years old ... which is old enough for her to now say, 'When I was a little girl ...' (I'm not kidding.) Both Joe and I think that the fifth birthday is a very big one - it's the birth of memory. We both remember back to our 5th year here on this planet, and we now know that Ruby will begin to store away bits and pieces of her life for future reference. I hope that the posts from this blog will be fun for her and for her sister when they get older.

Because we thought it was a big birthday, we shopped carefully, picking four very different presents. One from each of the 'four gift groups' of childhood. We wrapped them up, packaged them, and sent them along. We'd talked to her mom and dad who had a terrific day planned for her. They 'home decorated' a cake for her, exactly what she'd like. They planned to take her out of kindergarten at noon to a place where she could paint some pottery and have it put in a kiln and glazed. They organized family stuff with sister and grandparents. They had a special dinner. And, of course, she was sung 'Happy Birthday' several times.

So, at the end of the day, we got a call. Embarrassingly, she was up and we were in bed. Her dad told us all about her day and laughed at stories of what had happened and what she said. Then she came on the phone. And after all the planning, and shopping, and present opening, and singing, and painting, and glazing, and caking, and celebrating ... she came on the phone and said with a huge and excited voice ...


I think there is a life lesson buried in there.

Wednesday, September 14, 2011

A Really Honest Moment from Me

Here's an example:

We were going into the movie theatre to see a live broadcast of 'Last Night of The Proms' and were arriving with several other people. We got to the door of the theatre and Joe opened a door for me to go through. A woman rushed ahead and opened the door beside it, ostensibly to give me more room to get through. Now, here's the thing, the second door opened made no difference. Each door was separated by a divider. So she was holding open a completely separate door and doing so with great purpose. I said, 'It's OK, I can't use both doors.' She smiled at me looking very pleased - as if she was looking in at herself doing something wonderful for someone in a wheelchair rather than out at me in the actual physical world.

Here's an example:

I am checking out a room that I'm going to be speaking in. The woman from the hotel comes in to talk to me. I am sitting looking at the room. She stands behind me and begins to speak, I turn round in my wheelchair to see her. She doesn't notice that she is talking to Joe, not me, and yet I am the speaker. I have to ask her to come round front so I can actually see her when we speak. She is one of thousands who speak to me behind me, one of thousands that I have to ask to come round front for me to be able to see. She does as I ask and has a smile on her face, as if she is looking in at herself doing something special to enable a person with a disability to have a face to face conversation rather than out at the world where I have to instruct someone in how to simply talk to me as a regular person.

Here's an example:

A store clerk, answering a question, puts his hand on the handle on the back of my wheelchair, I can feel the side of his hand touching my back. He doesn't seem to notice. I ask him to please not put his hand there, that I prefer people not touch my chair when they are talking with me. He quickly lets go and apologizes. He stands there continuing the conversation with a look on his face that makes me think that he is looking in at himself being patient with and 'touchy' person with a disability, rather than out at the world wherein 'touch' is 'touch' and 'space' is 'space'.

It's tiresome to always have to be instructing others in the world about how to simply be with me as a person with a disability. It's tiresome to always be less important in the actual world than in the inner world of 'I'm special for being with, listening to, or following the direction of a person with a disability'. Tiresome.

I wonder do others feel the same?

Do others simply tire of having to ask people to be in the real world, in real time, with real respect?

Because, honestly, I do.

Tuesday, September 13, 2011

Voice and Choice

We went to see the movie 'Contagion' on Sunday and, while there, saw something that I wished were actually contagious - good care. I often see people with disabilities at the movies with staff or paid carers. Almost without exception it seems that the staff think that they are going to the movies and taking the person with a disability along - rather than being there to enable the person with the disability to enjoy the movie. I remember once watching a staff berate a person with a disability for deciding on popcorn just before the movie started. The staff was going to miss the start of the movie. Um, excuse me, but you're job isn't 'movie watching' ... but I think that the question of whose needs need to be met is answered incorrectly most of the time.

Not this time.

The fellow with the disability made it through a little over half of the movie before getting fidgety. This movie is quite talky ... and at some point the fellow seemed lost by the movie so he began looking around at other people and squirming around in his seat. In fact, this is when I noticed him. We'd come in a little late so most were seated already by the time we took our place. I noticed the staff lean over and say something to him quietly, I saw him answer by pointing at the film and smiling. (Note: I wasn't staring, they were almost right in my sight line. I noticed the movement.)

About ten minutes later, just as the pace was picked up and the plot raced towards the conclusion, the fellow with the disability indicated that he was ready to go. Without question, without debate, without subtle pressure, the staff smiled, gathered the stuff and got up. The two of them quietly left the theatre, I heard them going down the aisle way towards the door the staff's voice saying, 'Well, what would you like to get up to now?' There was a warm friendliness in the voice. No trace of annoyance that the staff was going to have to go about the rest of his days not knowing if the world was saved or damned.

I don't know who the young man worked for, I don't know who trained him in respectful care, I don't know how it was that he came to see his job as going with, supporting at -- rather than 'movie watching' and 'taking a tag-a-longer'. But however he came to it, the realization showed. He did himself proud, He did our profession proud. But most of all, he allowed a young man the opportunity to make decisions, to utilize choices and to have a voice that mattered.

Voice and choice, the fundamentals of good care. Simple. Easy. And, beautiful in practice.

Monday, September 12, 2011


The first time I asked a hotel clerk about the disaster plan should there be an emergency, I almost precipitated one. Joe was simply not in the mood for one of my 'disability awareness moments'. But knowing that he was impatient to get in the room, I stayed the course anyway, reminding myself to remind him about my new resolve to check out about safety when we are staying in accessible rooms that aren't on the ground floor. Anyways, the clerk blinked at me a couple of times and said, 'Pardon?' I asked again, sweetly, 'What plans has the hotel made for guests with disabilities should their ever be a disaster or an emergency?' On second hearing the question seemed to make sense to her, 'Oh, yeah, right,' she said, 'we all gather in the parking lot behind the hotel.'

'OK,' I said, 'but I'm on the second floor, the elevators are typically down during a fire or other disaster, what do I do? Is there a gathering place on my floor for guests with disabilities.' My question went back to being incomprehensible. She tried again, 'We all gather in the parking lot behind the hotel.' This answer, was THE answer and it was supposed to work. It didn't. I said again, 'But, as you can see, I am in a wheelchair, what plans are made for those of us who can't get to the parking lot behind the hotel.' She continued bravely, 'There should be no problem, the parking lot is accessible.' I said, calmly still, 'It's not accessible from the second floor, it's only accessible from this floor and my room isn't on this floor.' 'We don't have rooms on this floor,' she said exasperated, 'you have to go to the parking lot.' She saw I was about to say something more and she gave up, 'Just a second let me get the manager.'

The manager came, and as is often the case, she was barely out of her teens. The lives of thousands of travellers rests on the shoulders of boys who are learning to shave or girls who's breasts are still in training. Anyways, the manager came and explained that the hotel had a list of all the accessible rooms and in a crisis they would come and carry me down to the main floor. Now my wheelchair weighs more than the manager and clerk combined. I wasn't reassured. 'So, in effect, in a crisis, you and the clerk would rush into a fire and carry me down the stairs?' She had the grace to say, 'It doesn't seem like much of a plan, does it?' I said, 'No, I'm not reassured.' We talked a few seconds more and she said she'd raise the issue with the company. I went to my room, put on an episode of QI on YouTube to happy Joe up and the evening continued.

A couple of nights later we are checking into a really nice, really huge hotel, where we were staying on the twentieth floor. Joe had gone to get the luggage and I asked, nicely, about the disaster plan. The clerk, a very efficient looking woman, said, 'I've never been asked that question before. I don't know the answer, may I find out and call you in your room.' I thanked her. She called and told me that I was to gather with other guests who need assistance in the east stairwell and wait for assistance. In effect, I was to '9/11 it'.

Joe and I tried to figure out what our disaster plan would be, from the twentieth floor. I figure the best chance we had was to pray hard and sleep light.

Sunday, September 11, 2011

The Gathering Place - remembering those with disabilites on 9/11

It's just outside my door. The gathering place. The place where those of us with disabilities are to go in a crisis. Should there be a fire, an earthquake, a disaster of any kind, it is where we who move differently, who move mechanically, who move assisted, are to wait. I have been aware of this place, and places like it, for my entire existence as a person with a disability. On moving in to my apartment, a high rise, I'm told about it as I sign the lease. I'm smiled at. People are pleased that there is a plan. People want me to be grateful for the plan. Grateful that I have been thought about. But I haven't

9/11 taught me that.

We learn lessons from living. If we pay attention to the world around us, to the experience of others, our consciousness shifts. 9/11 shifted the consciousness of millions. People all the world over began to ask new questions about old problems. Personal safety, once assumed, was now a major concern. I was on a flight out of Toronto on the first day the skies were opened to air travel after 9/11 had closed them. I always sit at the back of the plane - airplanes don't back into mountains I figure - and I listened as the flight attendants readied the galley for flight, as they spoke nervously about being back in the air. I sat worried while they, just before they were asked to take their seats for the takeoff, held on to each other and prayed.

I saw discussions of preparedness on television. Questions about emergency planning were asked. Seldom did I hear mention of those in the twin towers with disabilities. Those that went to the 'gathering place' to await rescue and, to a one died. There was, of course, the heroic story of the guy with the guide dog that was guided to safety by the dog's training and instinct. To many he came to represent those with disabilities. He became the guy who escaped. Few spoke about those, waiting, gathered in the right spot following the wrong plan. Few mentioned the trust that had been given over by those with disabilities to those who planned for their well being.

I learned from this.

I really learned.

There are things you don't give to others. There are things that only you know about yourself and your abilities. I do not wish to simply wait while the world crashes around my shoulders, while flames leap up the sides of my wheelchair, while others who would come don't - or worse, die attempting to save me. When renting we rented an apartment that was exactly as high as I can make it down stairs. As long as someone is beside me. As long as someone holds my arm. I can make it to the ground. I have a light folding chair, one that can be easily carried. It can go with me too. At work, I know which stairwell I can negotiate most quickly. And, yes, I have practiced, I can get down them myself. My chair can come with me, I only use the light one at work.

9/11 taught me something. It taught me that my world can change in an instant. That I need to take responsibility for myself. It taught me that 'plans' for me or 'plans' about me are no where near as good as plans I make for myself. It also taught me that the deaths of those with disabilities aren't taken quite as seriously as those without. No other minority group was exterminated in those attacks to the percentage that those with disabilities were. None. Yet, somehow, they aren't talked about. Their stories will not be told ... their lives not really remembered. Except by those who loved them. And those, like me, who feel a kinship with them. Those like me who vow to them to have learned by the lives they lived - lives of contribution, lives of employment, lives of purpose and by how they died - trusting in a plan that could never work.

It's ten years after 9/11 and I still, in memory of those who gathered only to die, check out exits in every building I enter, in every place that I go. I want, like they did, to live. I want like they did, to trust. But I can't. I won't. Never again, I have learned, begins with me.

Saturday, September 10, 2011

The Blog that Fascinates

Yesterday I received an email showing me one of my readers and their obvious fascination with this blog. I had to share it with you. And, after travel and lecturing it allows me to give you something while giving myself a rest ... enjoy ... it's only a minute, it's worth waiting until the end.

Here's the link!!

Sorry, for some reason I couldn't get it to load on to my page here.

Enjoy anyways.

Friday, September 09, 2011

A Magic Moment

In the abuse prevention workshop we establish a set of ground rules right off. The first one, 'Everyone Is Valuable' begins a discussion about how to show someone that they are valuable or important. I am always moved at the kindness and generosity of the people with disabilities who attend these workshops. They talk about kindness, and helpfulness, and courtesy, and supportiveness. We go until we get to 'listening'. Now that I'm in a wheelchair, I say, 'As someone with a disability, I know how sometimes people don't listen very well to those of us with disabilities.' Without exception the group nods a deep agreement. They get it. They know I get it.

Then there is a brief discussion about how in this class, in this place, we will show that we value each other and we value each voice. We know that some take longer to speak. We know that some need courage to speak. We know this, we appreciate any and all contributions. It's a discussion I've had, literally, thousands of times in teaching this class, since I first started teaching it over 25 years ago. Occasionally, over those years and those thousands of classes, this 'first rule' causes a magical thing to happen.

During the discussion about feelings, we were talking about 'scared' ... what makes people scared. Several people had answered and there were many eager participants. I was signaled by a woman, at the back of the room who obviously had something to say. She speaks so softly, she speaks so carefully, she speaks with great effort. Words do not come easy to her. The room turned to her and then something magical, they waited with an almost spiritual quiet. Not a word was spoken, no one rustled, no one whispered, no one interrupted. They waited, I waited, to hear what she had to say. The staff sitting next to her, leaned down to hear the words as the softly left her lips.

When she finished speaking towards the waiting ear of the staff she looked up and thus signaled the staff to repeat what she had said, in answer to the question, 'what scares you?' she answered simply, 'being left out.'

Her words hung in the air, we all knew that the space that was made, the time that was given, did indeed communicate that we all valued her voice, that we all were enriched by her participation. I looked at her face in the moments after she had been heard. It was a face that reflected a grateful heart ... grateful that others took the time, that others created the space, that others waited for her words to come from her mouth. It was a moment of magic.

A moment that reminded me, as one who speaks words quickly, how important it is to stop, look and listen in interaction with others. We all knew, even the staff observers, what she meant. We all know what it is to be left out. We all know the pain of being one amongst many. Her words reminded us to not do unto others what we would not have done to ourselves.

A voice was heard.

And magic was made.

Thursday, September 08, 2011


Today was a travel day. Today was also a day were work constantly pinged my Blackberry and kept me mentally very, very, active. So ... I'm tired. Just a slice of life moment from today:

We stopped at the mall here in Timmins to grab a bite at the food court as the hotel room was not yet ready for occupancy. I rolled in and when looking for the washroom noticed that I was being stared at, hard. One of the best things about being home is that my 'difference' is 'normal' there. People have long since stopped being fascinated with how I look and how I move. Every time, that's every time, I go somewhere new I get a tidal wave of staring.

I felt the eyes on me. I only saw the fellow out of the corner of my eye and was convinced, wrongly, that he'd stop staring and look away.

He didn't.

I finally looked over to him with combat in my eyes. I saw a man, maybe 35 or 40, with Down Syndrome sitting at a table at the food court. He saw me catch his eye, then ... his face lit up with a smile and he waved. Friendly like. 'Nice to see you' like. 'Brotherly' like. 'Wecome to Timmins' like.

The smile hit my lips almost involuntarily. I nodded back, waving was out of the question as I was pushing myself. As soon as the greeting was done, he went back to his lunch and didn't look at me again.

I saw him, later, when I'd finished in the toilet and was sitting waiting for Joe. He glanced at me, recognition in his eyes, and went on. There was no need to acknowledge me further. He'd done his job. He'd made a stranger welcome.

It's a gift.


A gift.

Wednesday, September 07, 2011

The Trite Is True

"See," she said, "he's heartbroken. I should never have listened to you!!"

A few minutes of conversation later, the phone slammed down. Apparently I am incompetent, unethical and my ideas are ridiculous. I'm old enough to know that routinely, through my life, these all have been true. I've learned to expect that in my life yet to come, they will occasionally be true again. I have no need to be seen, or to see myself, as infallible. But, in this case, I'm not sure I concede her point.

I met her, while having tea, in a downtown mall somewhere on my travels. It was a couple of years ago. She stopped, shyly, and asked, "Are you Dave Hingsburger?" A few minutes later, we were in conversation. She knew I was in town from reading this blog, she had been reading since near the beginning, she never comments because she's shy of the computer and shy in interacting with others on line. Her middle son had just finished school and was working part time and attending a day programme part time. She had three children, two without disabilities, the middle boy was born with Down Syndrome. We chatted and we struck up an acquaintance that was marked by the occasional email and the less occasional phone call.

A while back, she'd called and was excited, upset, worried, anxious and hopeful all at the same time. We'd often joked about how parents of kids with disabilities had to get used to conflicting emotions or they'd just simply burst. Her son had met a young woman at the sheltered industry and had wanted to start dating her. She'd always been wary of her son's sexual maturity and his interest in various aspects of the female body. This was something that she thought she'd never have to deal with, being told, like many parents are told, by doctors early on in his life, that he's never grow up, never graduate, never marry. Doctors still think that children with disabilities live in 'never land'. So she'd put that all aside.

That first day we met she told me that one of my early books on sexuality, long out of print, had made her think twice about the issue and she wondered if her son would ever love and marry. The idea terrified her as much as it excited her. To know that he was loved and would be loved, gave her as much comfort as it did anxiety. Again, for parents of kids with disabilities, the conflict between hope and fear is part of the mix. Then, on maybe our second phone call, she told me about her son meeting this woman at the work shop. Her first impulse was to tell him that he was too young, that it wasn't a good idea, that he should have a job first. Her first thought was to put barriers and opposition in his way. Her second thought was to give me a call.

We chatted through the whole thing and she said, at the end of the call, that she knew before calling, that I'd say that her son needed to be given the opportunity to date and to even have the experience of love, should love come. I said that if she knew that before she called, then she was calling for affirmation not information and she laughed and agreed. She stepped out of his way. Her son went on a date. He fell in love. They became engaged. All was proceeding as if planned in a meeting by social workers. Everyone was on board and all were supportive of the relationship and the couple. (It sometimes seems to me that people with disabilities have so many people watching their lives, involved in the decisions being made, that it's almost, kind of, yucky.)

The call that came to me came because she, for some reason no one knows, broke off the engagement and has demanded never to see him again. He was devastated. He doesn't know why. He's crying all the time. Though he still makes it to work, he loves his job, he is listless at the day programme and inconsolable at home. He keeps saying, 'She broke my heart, mom, she broke my heart'. She called me to tell me that these ideas that people with intellectual disabilities could handle relationships were simply wrong headed, her boy was really, really, hurt. I tried saying, to no effect, that she was giving to disability what didn't belong to disability. Men and women break up, get hurt, cry themselves to sleep all the time, primarily because relationships are messy. They don't run a course established by a team and they are never pre approved by programme managers. They have their own life, an internal life, that no one knows, no one sees, and are often confusing for the two involved. That's life. That's all. It isn't about disability, it's about living.

The phone went down.

I felt terrible for her and I wanted to feel terrible for him. But I couldn't. When I first, all those years ago, began writing about and speaking about and advocating for the rights of people with disabilities to love and to be in relationships, I knew that I was really promoting the idea of people being included in life's richness. I knew that life's banquet offers both the bitter and the sweet. I was never naive enough to believe that people with disabilities would have magical 'elfin' relationships that were sprinkled by fairy dust and blessed by leprechauns. No, I knew that the relationships would be messy and that the wrong people would fall in love with the wrong people and that the heart would want what the head advised against and that there would be pain and there would be joy. I never expected less. And part of me was glad that he'd loved so much that it hurt, really hurt, when it ended. Love that passes without leaving a bruise wasn't love at all.

I write this blog today months and months after that phone call. You'd guess that I'd never write something with this kind of specificity without permission and that if I got permission we must have talked again. And, of course, we did. Her son is doing better, in fact he's spotted another young woman that he's interested in and is considering asking her out. His former fiance is now dating the workshop's 'bad boy' who apparently is only attracted to women who are dating other guys. Mother called and apologized, she said she'd been really upset seeing her son so hurt. She said that when he was born she worried about his heart, she says that now she realizes that she'll worry about his heart for the rest of his life. It surprised her that her son made it through the grief and the heartbreak. It surprised her that he was willing to give love a go again. It surprised her even more, that she didn't even think of opposing it this, maybe the second time.

We agreed that we were both old enough, though she is much younger than I, to know that life will happen the way it will happen. She can't script his future - something that still surprises her, being told his life story by doctors when he was born. He lives the life of an adult because, and only because, she allowed herself to be the mother of an adult. He's lucky in that.

This post is posted late today because I sent it to her last night for approval before publishing it. I had the approval in my mailbox this morning. So, here it is.

The story of a heart broken.

And a celebration of the fact that sometimes the trite is true: it is better to have loved and lost than to never have loved at all.

Tuesday, September 06, 2011

In The Line Up

I was in line behind a wealthy older couple (you can tell rich) to buy tickets to a movie. I'd spoken to them briefly when entering the theatre as they insisted on helping with the door. They insisted with charm, not force, and therefore, oddly, I didn't mind. We were behind someone using coupons so it took a fair bit of time to process them. The woman noticed a poster on the wall for an upcoming movie, Tower Heist, and said, 'I'll never go see one of his movies again, it's a pity because I've enjoyed most of them.' Her husband and I looked to see who she was talking about. He said, 'Who, Ben Stiller?'

She nodded. He said, 'Yes, I liked him too.' She, encouraged by his agreement said, 'That awful fuss around Tropic Thunder, you'd think he would have had the decency to apologize. Making a mistake is one thing, we all do that. Not acknowledging it when called on it, that's simply lack of character. I thought more of him than that.' Her husband agreed, I interrupted.

'You're referring, and forgive me for eavesdropping but I am sitting right here, to the use of the 'R word' in Tropic Thunder,' I said.

She tensed as if ready for a fight, which tells me she's had them before on this subject, 'Yes, I can't abide that kind of name calling.'

I said, 'Nor can I. I'll never give him another dollar either.'

We were silent for a moment, luxuriating in unanimous agreement. Then I asked, 'So, do you have a child with a disability, or friends with disabilities, how do you come to your opinion.'

She looked shocked, 'No, we don't have children with disabilities, but what does that have to do with the issue? Anyone who was ever teased in school knows that name calling hurts. I don't understand why people, when they become adults, simply forget the horrors of the playground. What is youth for if not to inform the years to come?'

I told her I agreed with her and suddenly they were buying their tickets and I was buying mine.

We waved goodbye and she said, 'It pleases me to think that every now and then when Mr. Stiller puts his hand in his pocket to find that he has no change, that it's my money that's not there.'

'Well said,' I said, because it was.

Monday, September 05, 2011

Blog Announcement

I have just become aware, because of checking my blog statistics, that Rolling Around in My Head, has been awarded the 'best blog' award by Blogs Canada. If you click the link you'll find the list of winners and, not surprisingly, some very good reading. Thanks Blogs Canada, didn't know I was nominated, didn't know I'd won, but the best prize is what you've given me ... more readers finding there way here.

Labour Day

She wore a bright yellow blouse. Her hair was pulled back neatly and held in place by a matching yellow scrunchie. Her hands held tightly on to her walker, her steps were small and delicate. Beside her walked a strong limbed young woman, who had, with some effort, matched her steps to walk along side. Just before the corner, she paused, moved the walker to the side, and sat down. They, together, chatted. One standing, one resting, with the journey yet to come waiting on the decision to begin again.

He sat on a tiny stool in the children's section of the book store. His son nestled in his lap. A vacant wheelchair beside them. Amid the stares of other parents and other children, he softly read a story to his little boy. The child relaxed into the warmth of his father's body, his eyes were heavy. He listened to the story, he listened to the love in his father's voice. Soon a sleeping child is placed back into his wheelchair, a book is placed back on a shelf, and a father, with the journey yet to come, pauses and looks at his boy.

A man, gray at the temples, is looking confused. He's not sure if it's safe to step out onto the street. Even though this is a downtown street corner, there is no light here. Crossing is determined by judgement, not colour. The young woman with him, maybe a third his age, simply places her hand on his arm to calm him. She says quietly, 'Just take a look, you know you know how to do this.' He waits for a car to pass, suddenly he sees the journey ahead of him and decides to make the crossing. He does so safely. He does so, on his decision not hers. His face shows pride.

It's Labour Day weekend, everywhere I go I see people engaged in the job of journey. Freedom and liberty are twenty four hour experiences. Thousands of people in this city, millions of people across the globe, go about the business of making community happen for thousands and millions of others. Work that is undervalued, underpaid and often misunderstood is done because it's the right thing to do, is done because making life possible for one, makes life possible for all. Institutions close because some choose to do the work that needs to be done. Nursing home beds sit empty because some choose to get up early to get others up later. Hospitals save lives because some choose to wash floors and wash sheets, while others choose to dress wounds and address needs.

It's Labour Day weekend, and children with disabilities wake to parents who rise daily to the work involved in parenting, and the extra time it takes to do what other parents never need think about. It's Labour Day weekend and people like Joe, who need to do more to make the same life as others, to make my life possible, do what they do because it needs doing. A labour of love, is still labour. It's Labour Day weekend and thousands of people make a holiday weekend for others by denying a holiday weekend for themselves. Time can be bought, but compassion can only ge given freely.

I think of Vita, where I work, I think of the faces of all those with disabilities that I know there. They, today, are going about their business because there are those at work today - going about their job of making life and liberty and the pursuit of happiness possible. And Vita is just one of hundreds. As a child I realized, one day, that I would never be able to count the stars in the night sky. As an adult, I realize, today, that I can never know the number of people who through choice, through circumstance, through concern, care for others who need care. From earth we see the brightness of stars. From heaven we see the lights of home, of freedom and of justice - lamps lit by those who care enough to strike the match.

From me, here in my wheelchair, at my computer, in my home made possible not just by the love, but by the work of another, I want to say thank you today, to all who work to make community happen, who make liberty possible and who's commitment to freedom changes the world, every day.

And, of course, to Joe, who's work is noticed seldomly by others  but makes every day possible for me.

Sunday, September 04, 2011

The Future: Canned

The beginning of September brings with it the smell of hope and optimism in the air. Particularly, here, where we live, a block or two from the University of Toronto, a few more blocks from Ryerson University and just down the road from one of Canada's most prestigious make-up schools. So we are surrounded by eager young students and of course, the occasional werewolf, headless creature, or alien - all out on the sidewalk having a smoke. For me, September will always, and I'm almost 60, feel like the beginning of a new year. Fresh books, clean unmarked pages, the distinct smell of new school stuff; all bring heady memories.

Too, it's canning season and Joe and I stopped on the way back from the vacation to pick up 75 pounds of tomatoes from the Holland Marsh farmers market. Joe eagerly put them in the trunk convinced that our 10 jars, 'they take a lot you know' would handle the lot. Um, twenty four jars later, a soup and a huge chili, the tomatoes are gone. I skin and chop each and every one of them. The smell of tomatoes fills the apartment and we fall silent doing the work. It's odd, thinking about the fact that these jars are being canned one day and the world can change the next. Who will we be, what issues will we be facing, what joys and sorrows will pass before these are opened and consumed. I brush those thoughts away, too dark, too dramatic, for such a simple task.

However, with the canning done, we headed out to buy birthday gifts for the girls, they are turning two and five, and they need stuff to open and exclaim at! We're going to Ottawa a week or two after the birthday and will be taking Ruby for her first High Tea at the Chateau Laurier and will be taking Sadie to a cosmic restaurant in a huge playland. It's all planned out, hotel is booked, tea is scheduled. Happy times will ensue. But, first the birthday gifts must be purchased.

We leave the apartment, still fragrant with the smells of cooking, stewing and canning, and hit the street. I notice something, immediately. There are young people everywhere. Did we look that young when we went to University, my head says 'yes' but my heart says 'no' ... these are kids!!! But, the faces of the kids have changed, there is huge diversity amongst the youth. And, in the mix, are several students with disabilities. Flashy wheelchairs, crutches and walkers, a group of students walking and signing excitedly to each other as they walk along. My sign is rusty, but it seems that they are full of what's yet to come.

Sitting skinning tomatoes, I thought about the future.

Moments later, I experienced it.

The world does change. Mostly in ways that's hard to see. But sometimes, gloriously, it changes and is as beautiful as a tree with only green, becomes one of yellow, and red, and orange.

I'm ready for the fall.

I'm ready for the future.

Saturday, September 03, 2011

Joe's Sort of Blog

Joe walks mad.

I can tell from a distance if he is upset, and I could tell in the few steps he took from door to dining room that he was really, really angry. He plopped down on the chair beside the desk and, though he normally waits to see if I'm working on something or writing an email, he started right in. "People and their Bloody cellphones,' he started, it's a rant that we've both made several times, but I knew something was different, 'I was in the line at the bank ...' he pauses and shakes his head.

'I was right behind a woman who was there supporting a young guy with Down Syndrome. She was on the phone the whole time she was in the line up. Don't people realize that they are always talking louder on the phone than they think they are, that they can be heard by everyone around them? She was gossiping with someone on the other end of the phone, I think it was probably a co-worker. All sorts of private information about the people they served was tossed out for all to hear. The man with her was really, really embarrassed listening to her. It was clear he knew that everyone else could hear. I didn't know what to do. Then when she said that she was at the bank and that she had to go soon because he needed help because he couldn't sign his name ...' here he paused to take a breath, 'I reached out and tapped her on the shoulder.'

Anyone who knows Joe, knows what a big deal this is. He is naturally reticent and almost never confronts anyone. Well, not true, he confronts me regularly. So doing this would have been very hard for him. 'I told her,' he said, 'that she was in public and we could all hear her. I told her that he could hear her. She hung up and told me that I needed to mind my own business. I wanted to tell her that it was her who needed to mind her mouth and not share his business with everyone in the line. When she said that he couldn't sign his name he looked like he wanted to die or to disappear.'

We talked this through. We decided two things. First, Joe wanted me to immediately write an email to all staff at Vita and tell them what happened and remind them that when they are in public, if they are on the phone, they are speaking publicly to everyone around them. He wanted me to try to make sure that everyone, at least at Vita, was careful. I wrote that email then and there. Joe doesn't ask these kinds of things of me often. Then he asked me to make this a blog so that everyone else would think about it too ... parents would be careful about talking about their kids publicaly on the phone, staff would be careful about sharing information out loud in public, that everyone would just be a bit more careful.

'His face will haunt me for a very long time,' Joe said. I didn't know what to do, I should have acted sooner, but I kept thinking it wasn't my responsibility - but then when I saw his face, I knew that it was.

I'm proud that Joe acted. I'm proud that he wanted me to do something to make sure that what he saw isn't repeated. Concern that becomes action is exactly what we need.

So from Joe to me, from me to you ... when you can be heard, even if only in your own heart, choose carefully the words that you say.

Friday, September 02, 2011

The Stilettos At The Top of The Ramp

"I was hoping to see you!!" He dashes out the store with a big grin on his face. He wears huge, HUGE glasses and speaks with a breathy cadence - one adopted by many a drag queen. He runs a store, around the corner from where I live, that sells bobbles and bangles and beads. I shop there regularly. Typically I point to something in the window and his daughter (there is story there but I've not yet asked) comes out bringing me the things I want to see. We've become very friendly, chatting about typical kinds of stuff. They know all about Ruby and Sadie as we've bought things for them from the shop for Gay Pride day. We know all about where they vacation. Chat stuff.

Anyways, over the last several months they've been updating me on their desire to have the store made wheelchair accessible. It's a very old building, built long before the idea that people with disabilities might not be so 'bound' by bed and chair. These buildings are so seldom ever adapted, at least around me here, that I thought their struggles with their landlord were 'cute' but probably completely futile. What I did like was the fact that they cared about their shop being wheelchair accessible and that they care about me as a customer. They never once, ever once, made a big deal out of serving me outside. I never made a big deal about not being able to get in because I didn't have to - they did that for me.

So yesterday I was pulling up to the store to see their new Halloween windows - it's their biggest time of the year. And he flew out of the store. Even in pants, he walks like he's in a gown! He called to his daughter and they both proudly showed me the new ramp that they'd had installed. They'd been waiting for me to come by and see their achievement. During the conversation I learned that daughter wanted dad to open the store so he had somewhere to store his dresses! She is not the sequin type but clearly loves daddy, who is. Gotta love families that work!

We all celebrated their achievement, I promised next time I came by to head into the store itself, Joe and I were a bit rushed to go in at that moment and when I go in, I want to shop. SHOP.

Maybe that's exactly why they wanted their shop to accommodate my chair - because the chair carried a true, to the bone shopper!

But whatever the reason, I was touched that someone cared, someone fought, someone won a battle - for me and for all who would want equal access to size thirteen stilettos and drop dead gorgeous rainbow wigs.

Thursday, September 01, 2011

A Photo Phinish!

Well, we've been home for a few days and blogs that I wrote about our little vacation have been appearing. I want to end those, officially, now with just a couple of photos. The one above shows Sadie in my arms and Ruby in Joe's.  We were just about to go have dinner on our last night there and were waiting for a table to be made ready for all of us. The one below was taken on our way back to the hotel as I wheeled along the boardwalk. Here I was going downhill and Ruby was riding on the back of the chair, standing on the two struts at the back and holding on to the handles. She loves this and when we get great speed she actually giggles herself silly. It's fun. Mike snapped this picture on his phone, without me knowing, and sent it as a surprise. Here it is for all of you. Back to the office tomorrow, back to real life for all of us.